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13 Tips for Navigating Romantic Relationships When You Have Fibromyalgia

When you live with a chronic illness, relationships can seem daunting. Whether you’re single and ready to mingle, just at the beginning of a romance or years into a partnership, you might not be sure how your chronic condition should play a role in your relationship.

Romantic relationships can be complicated for anyone, but it can be especially true if you live with fibromyalgia, a condition that causes widespread pain throughout your body. Other common symptoms of fibromyalgia include fatigue and cognitive issues, also known as “fibro fog.”

Though a romantic relationship while living with fibromyalgia might seem intimidating or complicated, it is still possible. Alicia Henry, LCSW, provides therapy in New York for people who are going through life transitions, chronic illness and much more. She believes people with fibromyalgia can be in happy and successful relationships by keeping two ground rules in mind.

“Fibromyalgia should not define you or your relationship,” Henry told The Mighty. “In any relationship, it is critical to communicate your needs to your partner. This first begins by knowing yourself and understanding what your needs are and how they can be met. Secondly, someone who loves you won’t let living with fibromyalgia be a hindrance to your relationship.”

Though Henry believes that fibromyalgia should not be the only focus in your relationship, she does recognize this can be easier said than done sometimes. It make take a little readjusting. Henry said working together with your partner gives you a greater chance at happiness. She added:

If fibromyalgia is affecting the time and/or the quality of time you and your partner are spending together, it is worth examining how you both can adjust to the situation together. This takes open and compassionate discussion with one another.

We thought it would also be helpful to ask our community for their advice on how they’ve navigated relationships while having fibromyalgia. Sometimes it can be beneficial to hear from others who are going through similar circumstances. Henry also weighed in on the advice our community gave.

Here’s what our community had to say:

1. Communicate as often as possible.

Communication was the most suggested answer by our fibromyalgia community, and Henry agreed. Your partner isn’t psychic and neither are you. Talking to each other is a great way for you both to learn more about each other and the experiences you are going through as well as brainstorm how to work together.

Communicate!! Make sure your partner knows the symptoms of fibromyalgia and what you deal with daily. Make sure to tell them how you are feeling all the time and never be afraid to ask for help. And also always tell them when you are having a good pain day. This way, if they want to be intimate with you they won’t feel guilty thinking you’re in pain. — @sommerc

Communicate. Tell your person how you are feeling. Explain what you need for you and from them. Sometimes you can’t be touched because you are hurting everywhere, so explain why. Explain the pain in the best way you can so your person knows that you are not pushing them away; you want to share with them, but cannot be close at that time. It is so difficult to share intimate moments when you can’t be held because it hurts. — Robin M.

I’ve been with my boyfriend for three years now and honestly just talking and being honest when I’m tired, or frustrated, or whatever. Sometimes it gets frustrating, especially when I’m having a good day and he’s just tired from work or whatever, or when I’ve been having three bad days in a row and honestly just want to grump. But we talk about it and that’s really helped us. — @bloodanube

2. Remember you are more than “just” your fibromyalgia.

Don’t forget you’re a full-fledged human and fibromyalgia is only one aspect of your life, including in your relationship. “If your health is always the focus it can put strain on your partner or your relationship over time,” Henry said. She recommended adding to your support network by attending personal therapy or joining communities like the fibro community on The Mighty.

My husband knows my signs of a bad spell, but even still I find it easiest if I don’t share too much of the details. I often tell him if it’s a fog day or pain day and it’s usually enough. I don’t like fibromyalgia taking over life, so I’m not about to let it take over my relationships too. — Kristi M.

3. Make sure your partner understands your pain levels.

Fibromyalgia pain can be difficult to describe, but just try your best to explain and be honest with your partner about what you’re going through. Henry said everyone’s feelings are different, so it’s important to really be specific about your needs.

My hubby and I have developed a score system so he can kind of gauge how I am. I just score from 1-10 with 1 being totally bed-bound, lying flat, no energy what so ever and in agony, all the way up to 10. Not that I will ever score a 10, but he knows anything below 5 is bad and above I may be able to manage a little something. — Ruth F.

Always be honest with your partner about your pain levels. Make sure they understand that sometimes you’re just unable to function for one reason or another. And make sure they’re also honest with you about how they’re dealing with your fibro, especially emotionally. — Becca L.

4. Find someone who accepts you for who you are.

You deserve to find a partner who accepts you, whatever your health situation might be and all. Henry agreed that if you are living with fibromyalgia, you should be with someone who accepts that part of your life too.

Find someone who loves you for who you are, fibro, pain and all. It’s a wonderful thing to feel completely accepted and to let go of embarrassment and shame in my daily life. — Jenny L.

5. Educate your partner on what fibro is like for you.

“Knowledge about what fibromyalgia is and the variety and range of symptoms is important for any partner to understand,” Henry said. Fibro can be mystifying unless you experience it, so help your partner understand by talking them through your world and pointing them toward additional resources so they can educate themselves.

Be honest about how you feel. Give them stuff to read about fibromyalgia, or get other people diagnosed with it to talk to them. Sometimes it can be accepted more from someone they don’t know. — @pollyannstubbs64

Be fair to your partner if/when they don’t understand what you’re going through. It isn’t that they don’t care (or if it is, you are with the wrong partner). It’s that they haven’t experienced what is like, so it’s foreign to them. Communicate about your experience and what your current state is. — Pamela T.

6. Don’t put all the pressure of how your health impacts your relationship on your shoulders.

It’s perhaps easy to feel guilty about how your health impacts your relationship, but you’re not alone on that journey. You and your significant other are in a romantic partnership together. It’s up to both of you, not just you, to figure out what works in your relationship and what doesn’t. “In order to have a healthy relationship, each partner should be compassionate about what the other person may be going through,” Henry advised.

It’s important to be aware of how your partner reacts to your pain and illness in general. There are often ‘silent’ signs of dismissal or disbelief, and this can undermine your own sense of worth and pain validity. If your partner is not respectful of your boundaries (particularly because they change as your pain changes) and redirects conversations about the pain you experience, then that’s a huge sign on an unhealthy relationship. It’s about empathy, from both sides. But you should never be in a position where you feel as though you can’t express your pain or emotions. — Lea A.

7. Seek out insight together as a couple.

“I think that a healthy relationship is one where each person works to understand what the other is going through to best support them,” Henry said. While you might be the one living with fibromyalgia, your partner should also be interested in finding advice and insight and working just as hard in the relationship as you.

Seriously, I think the best advice I have is to always be looking for advice. I have an amazing husband. We talk constantly and openly. Yet I still find myself hiding my most painful days from him at times. Keep looking for that advice. Don’t give up. Don’t choke them. Love them the way you want to be: openly and freely loved. — Michelle J.

8. Be patient with each other.

“Patience is key in every relationship, especially when a wrench like chronic illness is thrown in,” Henry said. “Both partners need to be mindful of one another’s needs.” It can be frustrating if your partner isn’t automatically understanding, but that doesn’t always mean they deserve quick judgement for it. Work together on figuring out your relationship and try your best to be patient.

Even though it is frustrating to the point of madness to feel that people don’t understand you or what you are going through, the best way to keep from derailing relationships is patience. Be patient with the very people who constantly lost their patience with you. For the most part, your loved ones just don’t get it. They don’t mean to be hurtful, they just don’t understand. — @Wendy C.

Open, honest communication is a two-way street. Don’t lie about your symptoms, but don’t get upset when they may not understand because they don’t experience it. This is NOT to say that you should put up with verbal abuse or put downs, only that you need to help each other. Answer questions, try to explain what’s going on, but don’t get upset if they don’t ‘get it.’ — Vicki B.

9. Remember that your partner has bad days too.

Though your partner may have different health circumstances, they are also an important aspect in your relationship. Their mental health and physical health will impact how they show up in the relationship too. Henry said it’s more important to focus on supporting each other rather than comparing bad days.

If you date someone who has a chronic illness/disability, too, learn to care for yourself when you are both having a bad day — this will greatly benefit your relationship. When my husband and I are arguing because we feel fatigued and still need to do chores or anything, the first one to notice what’s going on just says ‘let’s each care for ourselves right now’ and then the argument just stops (unless something else is bothering us of course). The ability to care for ourselves gives our relationship extra resilience, which helps us through tough times that have nothing to do with pain/fatigue. — Emma Z.

Two-way communication and two-way compassion. I need to know what he needs and he needs to know what I need. He’s an extrovert and needs time out with people and I need time alone and extra naps. — Juliann H.

10. Be honest about your life from the very beginning, if you’re able.

While some feel comfortable being open from the very beginning of a relationship, it might not be something you want to talk about on a first date, second date or whenever. That’s OK. “I believe this is a personal decision best left up to each individual,” Henry recommended. Your attitude about your life with fibromyalgia is unique to you, so it’s your choice about how open you want to be from the start.

Explain your condition as simply and clearly as possible. Don’t be defensive, just honest. If your friend or significant other can’t deal with it, that is certainly sad, but it’s better to know early in the relationship. You can’t control fibromyalgia or fake it. It is not who you are; it’s something you have. — Bobbi L.

Honesty is the best policy. If you’re just getting into dating, be upfront about the illness, no matter how difficult it is to admit or talk about. The reaction from the other person will tell you all you need to know about their character. — Jen M.

11. Be true to yourself.

Your feelings are always valid and you deserve to be with someone who treats you with kindness. Don’t diminish yourself or lessen your worth for someone else. “If you define yourself as just ‘sick,’ your thoughts and sense of self will likely reflect this,” Henry said. “What you choose to focus on about yourself and your circumstances will guide your emotions and behaviors. Choose a self-narrative that empowers you!”

My best advice is to be true to yourself. Be honest. Be careful with yourself. Anyone worth being with, will treat you like you are worth being with. Expect kindness, affection and respect, and don’t settle for less. — Shelly C.

12. Don’t push yourself farther than you can go.

Balance can be tricky, but it’s important to know how far you can go and what you are capable of and communicate that clearly. “It is definitely important to know your limitations,” said Henry. “I would, however, caution you not to set too many hard limitations for yourself and rather, plan for the worst case scenario. You don’t want to miss out on opportunities for fears of ‘what if’s.’”

I guess I’d say don’t hide or minimize your symptoms because the other person/people need to know in order to understand, and don’t push yourself to do too much because you think you should. You are worthy and good enough as you really are. — Elaine R.

Always be honest and never play the hero. Your significant other can be your strongest team member but they need to know what’s going on to help you. — Katherine B.

13. Instead of feeling guilty for your needs, feel appreciative for your partner instead.

It can be easy to feel guilty if your partner is supportive and understanding. However, your partner is probably supportive for good reason. Know that you are worthy of that support and focus on gratitude. “Focusing on being appreciative is excellent advice and a great way to keep yourself grounded in the positive,” said Henry.

My husband does most of the household chores that involve a lot of movement, but on my good days I do what I can. I would say just always communicate thankfulness to them. Don’t feel guilty or grovel. Just express appreciation for what they’re willing to do to help you. If someone can’t understand your limited spoons and spoon theory and makes you feel guilty and they resent you after you’ve communicated as openly as you can, they’re not a good match. You deserve someone who understands or understands as much as someone without fibro can. — Kaytina F.

Communication isn’t always easy in a relationship and describing what a condition like fibromyalgia feels like can be difficult. Henry is adamant couples counseling can give you and your partner a safe environment to communicate with one another if you or your partner needs guidance or help with coping mechanisms. Please know you are worthy of love and a happy and healthy relationship if that’s what you want. If you are struggling with this, please reach out to someone you trust and talk to them.

To read more about navigating romantic relationships when living with fibromyalgia, check out the following stories:

Header image via Everton Vila/Unsplash